'Recovery' statistics

The following four posts have been moved from
NICE guidelines: Final scope and equality impact assessment published
ETA: This post originally followed some discussion of the NICE stakeholder comments on the scope.

The Royal College of Psychiatrists and a couple of other organisations had challenged NICE's statement that full recovery was uncommon ('for most people complete recovery is unusual'), and so NICE had removed that statement.

We then began to discuss whether this was the right decision. Some of the context is missing from the quote below.
DigitalDrifter said:
https://www.nice.org.uk/guidance/gid-ng10091/documents/consultation-comments-and-responses-2

It's a good read if you're well enough (I've only read bits of it). I noticed that Royal United Hospitals Bath NHS Foundation Trust on page 95 said:


The study seems to be this: https://www.ncbi.nlm.nih.gov/pubmed/22385683 - Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial.

A long time? Try decades or even a life time. I think this needs to be clarified. Does anyone have data on recovery rates including how they defined recovery?
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Usually it's said to be about 5%. Which is pretty poor.
 
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It's complex because no-one has followed patients over time. We have no idea how many people recover permanently, and how many have a sustained remission but then relapse again later. Even if the will were there, I don't think it'd be realistic to do this at the moment – we need stronger diagnostic procedures, and a body of clinicians who're simply not given the option to regard ME as something they can choose not to 'believe in'.
 
Jonathan Edwards said:
If someone has said 'for most people complete recovery is unusual' then it would be good to improve the English usage. Recovery is not usual or unusual for a person - it is unusual with a population.
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It reminds me of when you have tossed a coin, but not yet uncovered it, and asked what the chances are of it being a head. There is no such chance: it already either is or is not a head (unless Schrodinger's cat is watching). English is a poor language to use for logical thought.
 
Jonathan Edwards said:
If someone has said 'for most people complete recovery is unusual' then it would be good to improve the English usage. Recovery is not usual or unusual for a person - it is unusual with a population.
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But that isn't what they're complaining about.

They're claiming that "recovery" (or remission) is not unlikely, when the systematic review found median "recovery" only occurred around 5% of the time. If they think 5% is a high chance of success, then I have some betting games I'd like to play with them!
 
From the experience of Dr Bell and his pediatric cohort, ‘recovery’ needs to be defined. Decades following the mid-80’s outbreak, he reassessed his patients to see how they were doing. While patients themselves declared they were living a fairly normal life, Dr Bell noted that the patients had adjusted their lifestyle to accommodate their limitations: some worked from home, some only worked part time. Many opted out of active lifestyle which excluded sport and extensive social life. In his views, he felt that the patients were still sick, but had adjusted and accepted.
 
Milo said:
From the experience of Dr Bell and his pediatric cohort, ‘recovery’ needs to be defined. Decades following the mid-80’s outbreak, he reassessed his patients to see how they were doing. While patients themselves declared they were living a fairly normal life, Dr Bell noted that the patients had adjusted their lifestyle to accommodate their limitations: some worked from home, some only worked part time. Many opted out of active lifestyle which excluded sport and extensive social life. In his views, he felt that the patients were still sick, but had adjusted and accepted.
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I think of this often when trying to work out whether I really have improved in the last few years, or have just got used to it and adapted.
 
Although some people do suffer for a long time, statements saying that recovery is unusual, could lead young people who suffer with ME/CFS to believe that recovery is not possible, when for them it may be.
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Bullshit. It could lead young people to believe that recovery is unusual, because it is. That could be tempered by the news that younger people seem to have better prospects. But what some people speculate other people might believe shouldn't be a guiding factor here. How about just telling people the truth and see how they deal with it instead of trying to steer their "beliefs".
 
TiredSam said:
Bullshit... How about just telling people the truth and see how they deal with it instead of trying to steer their "beliefs".
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It's difficult, but one problem with backing out of telling the truth is that it encourages them to look at con artists who convince them that they have the answer. It also encourages them to strive for unlikely goals, often damaging themselves further in the process.

Those who do recover, don't have much of a problem catching up.
 
I agree that withholding the truth from patients that they probably have a serious and incurable illness makes it more likely that they will become frustrated with mainstream medicine and try to find an answer and cure themselves somewhere else.
 
There are other aspects too to being truthful with the patient -

They can be honest and truthful with friends and family and this will make it easier to manage and maintain relationships. Especially if supporting information is provided by health charities, the NHS for example.

Setting family expectations is also important for finance. Could impact childcare and all sorts of other things.

The patient can be truthful and open with employers A small number of people might be able to handle part time work, but a supported exit from the workplace would be far preferable and less disruptive for both employer and employee.

Finances - knowing the truth about the disease from the start means the patient can make informed and sensible decisions about their finances. This could save patients from making unwise choices early on and potentially reduce the risk of money problems for them and their families later on.

The thing most charities, governments and BPS enthusiasts forget is that, far from giving secondary benefits, being ill means you still have ALL of the problems you have before IN ADDITION to being ill. Being ill means you lose the power to do something about many of those problems.
 
strategist said:
I agree that withholding the truth from patients that they probably have a serious and incurable illness makes it more likely that they will become frustrated with mainstream medicine and try to find an answer and cure themselves somewhere else.
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I never understood that obsession. It defies all common sense, seems to think of us as so fragile that people would just lose the will to live if they learned they had an incurable disease. Looking at other incurable diseases: definitely not. People make the best with what they have as long as they get the necessary help to function. Withholding all support is the worst possible idea here.

In the end you are absolutely right, the only real impact of doing so is harming trust in experts. It's literally a common trope in the reactionary movements, especially antivaccination, to point to such instances of experts actually making stuff up as evidence, and frankly you can't really blame them, I'm sure in most cases there is personal experience of the toxic mix of ignorance, ideology and hubris that pervades the worst approaches to chronic health problems.
 
@Invisible Woman, those are such important points!

And this goes for parents with sick children as well. It makes it hard for them to know how to help their child, or plan for the child’s future, or accept the child’s limitations and so on, if they haven’t been explained the reality of the illness. Which is an awful, helpless place to be for both the child and the parents.
 
It could be that spontaneous remissions in young people with ME/CFS are not rare. https://www.s4me.info/threads/long-...Gny06q2KKPtd1woSgAvJJpKwQBJvPXtj3noofkUuV2fEM
But this doesn't help the other (young) patients who stay ill. There is no treatment which means the disease is incurable even when there are patients who go into remission. Improvement or remission is just luck.
I always find it sickening when BPS proponents like Wyller are using cases of spontanous remission to claim you can get over it by changing your attitude.
 
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